Rare, incurable syndromes like Ehlers-Danlos are often mysterious. Many doctors struggle to diagnose the condition because it isn’t easy to define and can manifest in various ways. Some health professionals even reject patient complaints, chalking it up to hypochondria.
Ehlers-Danlos Syndrome (EDS), while sometimes challenging to identify, is very much real and can impact every aspect of someone’s life. This progressive condition can leave some unable to work or take care of daily tasks.
What Is EDS?
EDS is a group of disorders affecting connective tissue. While each type affects the body differently, they all have abnormal collagen structure that affects how connective tissue supports muscles, skin, joints, and organs. Mutations in different genes have been shown to cause various types of the condition. The syndrome is hereditary. Some variations must be passed down by both parents while other forms can present when there is only one mutated gene copy.
There are 12 types of EDS:
- Arthrochalasia EDS (aEDS). Presents at birth with severe hypermobility of small and large joints, easy joint dislocation, and muscular hypotonia (decreased muscle tone).
- Brittle Cornea Syndrome (BCS). Involves thinning of the cornea (protective outer layer of the eye), which may lead to tearing or rupture.
- Cardiac-Valvular EDS (cvEDS). Characterized by problems with the heart valves, high blood pressure, and easily bruised skin.
- Classical EDS (cEDS). Skin hyperextensibility, atrophic scarring, and generalized joint hypermobility.
- Classical-Like EDS (clEDS). Unusually large range of joint movement, soft and fragile skin, and easy bruising.
- Dermatosparaxis EDS (dEDS). Saggy and redundant skin especially around the face. Other symptoms often include hernias and joint hypermobility.
- Hypermobile EDS (hEDS). May appear first as “growing pains” in children. Joints dislocate easily and wounds take longer to heal. Frequent headaches and dizziness can occur.
- Musculocontractactural EDS (mcEDS). Born with a club foot and adducted thumbs, delayed development, and weak muscle tone.
- Myopathic EDS (mEDS). Joint contractures (unable to extend) at the knee, hip, and elbow while having hypermobility in ankles, wrists, feet, and hands.
- Periodontal EDS (pEDS). Serious gum inflammation, gum overgrowth, and tooth loss.
- Spondylodysplastic EDS (spEDS). Bowing limbs, short stature, and lack of muscle tone.
- Vascular EDS (vEDS). Presents with thin, translucent skin that bruises easily, fragile blood vessels, and organs that can easily rupture.
If you combine all types of the condition, EDS is present in 1 out of every 5,000 people worldwide. Individual types can range from 1 to 5,000 to only a handful of cases.
Condition Can Affect Otherwise Healthy People
Depending on the type of EDS and its severity, the symptoms can begin gradually and then snowball. Not understanding what is going on in their body, sufferers bounce from doctor to doctor looking for an answer. They’re made to believe their symptoms are psychosomatic (all in their head).
Even more frustrating is how EDS can affect people who otherwise seem healthy. One great example of this is a doctor, profiled on Dec. 27 in The Washington Post. Dr. Alissa Zingman was active and athletic. She was a dancer, touring professionally in Paris by the age of 15. She began to experience repeated leg injuries and was then hit with gastrointestinal and allergy problems.
As a young adult, Zingman went to medical school. Her doctors brushed off her request to be evaluated for EDS after she heard about the syndrome in a lecture.
By some standards, she appeared healthy. She was a Pilates instructor and choreographed dance. She went to the gym twice daily between her shifts at the hospital. But by the fourth year of her orthopedic surgery residency, she could barely push the X-ray machine around. Walking from the parking lot to the hospital was nearly impossible. Her pelvic joint consistently slid in and out.
She finally connected with doctors who took her symptoms seriously. After years of uncertainty, she was diagnosed with EDS. She now runs a clinic specializing in treating EDS patients. She’s hired athletic trainers, physical therapists, and an osteopathic doctor to work alongside her as part of the treatment program.
Focused Legal Counsel for Disabling Conditions
If EDS affects your ability to work and live a productive life, you do have options. Our law practice is dedicated to helping people get the disability benefits they deserve. Every lawyer at Dabdoub Law Firm has a deep understanding of the disability laws and tactics that insurance companies and other agencies use to try to deny rightful benefits.
Our Lawyers Specialize in Disability Insurance Claims
Because our law firm has always focused only on disability insurance, our lawyers are experts in legal representation for disability insurance benefits.
That means our disability lawyers have:
- Won several major disability lawsuits that help make better laws for disability claimants;
- Experience fighting every major disability insurance company, such as UNUM, Hartford, MetLife, CIGNA, Prudential, and more.
- Successfully represented hundreds of clients and won millions of dollars in disability benefits.
Because federal law applies to most disability insurance claims, we can help clients across the country.
Disability insurance companies have lawyers. You should too. Call Dabdoub Law Firm to get experienced disability lawyers on your side.
We can help with:
- Submitting your disability insurance claim,
- Appealing a long-term disability denial,
- Negotiating your lump-sum settlement, or
- Filing a lawsuit against your disability insurance company.
We work with clients nationwide. Contact us today for a free consultation. Call (800) 969-0488.